12:00 update

Malachi is in recovery mode once again. The narrowing apparently wasn't that bad, so it wasn't anything too worrisome. Woo hoo! BUT they still went ahead and did the balloon angioplasty to take care of it since they were already in his heart. The good findings were that his lungs are fine and the veins and shunt are doing their job to get blood where it needs to be. The pressure in the pulmonary veins was adequately low--which is a good thing. They did the blood gas from the area directly AFTER the lungs and it was good. This blood is oxygenated to the point that it needs to be, so the lungs are doing their job. The flow from the aorta and the sano shunt were almost equally good, so the flow isn't a problem. However, the sano shunt isn't exactly one single arch from the ventricle to the lungs. Instead it comes out and then goes into almost a right angle before curving up to where it connects with the lungs. So there may be SLIGHT restriction or disturbance, but it's still okay for him--just not as ideal as they would like to see. Also, his right ventricle is all well and good. The cardiologist who did the cath today said if they can correct the rhythm within the next few weeks, then he will most likely need another heart surgery. Those are the "good" things.

The catheterization proved that he does not have pulmonary hypertension. The blood flow is fine. Also, there are no further structural defects from a heart standpoint that are causing his O2 sats to be low. So now, we focus on the rhythm problem. There seem to be two different schools of thought within the cardiology department regarding what to do if a happy medium with medication cannot be found to keep him out of SVT and also to keep him from having a slow heart rate (bradycardia). I think that pacemaker vs. no pacemaker will be the big debate in the next few weeks.

The "bad" thing is that we have no clue what is going on with his rhythm. It's never encouraging when you hear the cardiologists use the phrases "I have no clue" and "he just doesn't make sense." Thankfully, we serve a big God who does know the ins and outs of our child. We are praying that He gives the doctors wisdom to figure our baby out and clarity of thought and speech within their department, the NICU team, and John and I.

So we're back and recovery mode and this is where we are... for now.

12:00 update

Malachi is in recovery mode once again. The narrowing apparently wasn't that bad, so it wasn't anything too worrisome. Woo hoo! BUT they still went ahead and did the balloon angioplasty to take care of it since they were already in his heart. The good findings were that his lungs are fine and the veins and shunt are doing their job to get blood where it needs to be. The pressure in the pulmonary veins was adequately low--which is a good thing. They did the blood gas from the area directly AFTER the lungs and it was good. This blood is oxygenated to the point that it needs to be, so the lungs are doing their job. The flow from the aorta and the sano shunt were almost equally good, so the flow isn't a problem. However, the sano shunt isn't exactly one single arch from the ventricle to the lungs. Instead it comes out and then goes into almost a right angle before curving up to where it connects with the lungs. So there may be SLIGHT restriction or disturbance, but it's still okay for him--just not as ideal as they would like to see. Also, his right ventricle is all well and good. The cardiologist who did the cath today said if they can correct the rhythm within the next few weeks, then he will most likely need another heart surgery. Those are the "good" things.

The catheterization proved that he does not have pulmonary hypertension. The blood flow is fine. Also, there are no further structural defects from a heart standpoint that are causing his O2 sats to be low. So now, we focus on the rhythm problem. There seem to be two different schools of thought within the cardiology department regarding what to do if a happy medium with medication cannot be found to keep him out of SVT and also to keep him from having a slow heart rate (bradycardia). I think that pacemaker vs. no pacemaker will be the big debate in the next few weeks.

The "bad" thing is that we have no clue what is going on with his rhythm. It's never encouraging when you hear the cardiologists use the phrases "I have no clue" and "he just doesn't make sense." Thankfully, we serve a big God who does know the ins and outs of our child. We are praying that He gives the doctors wisdom to figure our baby out and clarity of thought and speech within their department, the NICU team, and John and I.

So we're back and recovery mode and this is where we are... for now.

10:00

One of the members of the cardiology staff just came to find me in the waiting room. They did find something wrong with his heart: coarctation (narrowing) of the aorta. They will be doing a balloon angioplasty to go in and inflate the area so as to stretch it out and widen the narrowed area. It is good that they found something during his catheterization and that it is fixable, BUT this will most likely create new problems. This narrowing was likely causing blood flow to the body to be restricted, therefore more blood was being pumped into the lungs. This may mean lower oxygen saturations for Malachi, which has already proved to be a problem. We will wait and see.

10:00

One of the members of the cardiology staff just came to find me in the waiting room. They did find something wrong with his heart: coarctation (narrowing) of the aorta. They will be doing a balloon angioplasty to go in and inflate the area so as to stretch it out and widen the narrowed area. It is good that they found something during his catheterization and that it is fixable, BUT this will most likely create new problems. This narrowing was likely causing blood flow to the body to be restricted, therefore more blood was being pumped into the lungs. This may mean lower oxygen saturations for Malachi, which has already proved to be a problem. We will wait and see.

blue ribbons

So I'm not sure why this type is bolded and underlined, but I don't have the time to mess with it at the moment ;) Some of our family made these prayer reminder bracelets for us as a result of the ribbons so easily falling off. Thanks Evan and Bri! (If you do have a ribbon, it works better if you get it wet when you tie the knot. It seems to dry a little tighter). So here we are sporting our original ribbons AND the new bracelets. If you are wearing something blue around your wrist to support Baby Chi and are continually keeping us in your thoughts and prayers, please send me a pic (marissasharbaugh@gmail.com).

I just love my new camera!

Also, this picture couldn't have come at a better time. A few weeks ago I was having a really hard day in the NICU at Chi's bedside. I needed a break from all the alarms and buzzers and dingers and just the stress of it all. I went to the resource center to research a few new terms that had been thrown around in rounds concerning my child. While I was on the computer, I had my e-mail up. Five minutes before I had signed in, this was sent to me and was waiting for me in my inbox. God is GOOD!! We love you, too, Handy family! ;) Hopefully, one day, you will get to meet our super precious little gift from God!

blue ribbons

So I'm not sure why this type is bolded and underlined, but I don't have the time to mess with it at the moment ;) Some of our family made these prayer reminder bracelets for us as a result of the ribbons so easily falling off. Thanks Evan and Bri! (If you do have a ribbon, it works better if you get it wet when you tie the knot. It seems to dry a little tighter). So here we are sporting our original ribbons AND the new bracelets. If you are wearing something blue around your wrist to support Baby Chi and are continually keeping us in your thoughts and prayers, please send me a pic (marissasharbaugh@gmail.com).

I just love my new camera!

Also, this picture couldn't have come at a better time. A few weeks ago I was having a really hard day in the NICU at Chi's bedside. I needed a break from all the alarms and buzzers and dingers and just the stress of it all. I went to the resource center to research a few new terms that had been thrown around in rounds concerning my child. While I was on the computer, I had my e-mail up. Five minutes before I had signed in, this was sent to me and was waiting for me in my inbox. God is GOOD!! We love you, too, Handy family! ;) Hopefully, one day, you will get to meet our super precious little gift from God!

8:00 cardiac cath

Well, I got to the hospital this morning in just enough time for them to tell me that the module was closed due to a new admission. Sweet, no cuddle time for my baby this morning before heading to the cath lab. Thankfully I was able to be at the hospital last night after the birthday party for a couple hours. I didn't have to wait too long outside the module because within a couple minutes they had him all moved into his transport isolette and ready to go to the cath lab. I walked with him, the nurses, and the respiratory therapist down to the cath lab and said my goodbyes and three squeezes on his arm. Something little our family does: 1-I, 2-love, 3-you. I'll keep updating throughout the day.

8:00 cardiac cath

Well, I got to the hospital this morning in just enough time for them to tell me that the module was closed due to a new admission. Sweet, no cuddle time for my baby this morning before heading to the cath lab. Thankfully I was able to be at the hospital last night after the birthday party for a couple hours. I didn't have to wait too long outside the module because within a couple minutes they had him all moved into his transport isolette and ready to go to the cath lab. I walked with him, the nurses, and the respiratory therapist down to the cath lab and said my goodbyes and three squeezes on his arm. Something little our family does: 1-I, 2-love, 3-you. I'll keep updating throughout the day.

malachi=2 months + 2 days; emerson=2 years!!

4:30 we got the call. Malachi is back in SVT (supraventricular tachycardia--a.k.a. super fast heart rate) and is unresponsive to the usual medication. The fellow that was on overnight was working on him at the bedside. they gave a few doses of adenosine which didn't help for longer than a few seconds. The also attempted a vagal response maneuver to trigger the diving reflex (practically suffocating him briefly with an ice bag to his face--horrible to think about). This too helped, but only for a brief amount of time. Procainamide was once again started. He received 3 boluses and then was put on a drip IV for the rest of the day.

The SVT came on all of a sudden around 3:00 a.m. with a heart rate spike to 270. From just looking at the monitor, our nurse assumed that he was TICKED! When she looked at him laying in his bed though he was fast asleep. She immediately knew that something was wrong. I came into the hospital around 7:00 a.m. assuming that the cardiac cath was still going to go on as planned. Anesthesia even came by this morning to get my consent. At about 7:45 the cardiologist who was going to have been doing the cath came to visit Chi at the bedside. He made the decision that it would be best to wait and let the SVT resolve before pursuing the cath. Not only would it be a riskier procedure from an anesthesia standpoint with the SVT, but they would also get a more accurate picture of what his heart looks like "normally" if they waited. So today... we waited. Slowly, he his rate made its way down and he is no longer in SVT. The cath has been postponed until tomorrow morning (12/30).

I was very overwhelmed at Chi's bedside this morning. I was really looking forward to hopefully getting some answers this morning. I can be patient and I can wait another day. I just want the doctors to figure out my baby. I want him to be better. I want to bring him home. I was very much focused solely on myself this morning and was thankful that God snapped me out of it. I was fighting the mommy guilt bigtime today in regard to spending time with my sick baby at the hospital and spending the day with Emerson. Today was her 2nd birthday! Thankfully, things started to settle at the hospital and I was able to be there for rounds from cardiology and NICU. I made it home by like 1:30 this afternoon and laid down with Emma for her nap. I was just going to lay with her until she fell asleep, but we BOTH ended up taking a THREE hour nap. It was much needed for both of us.

We had a birthday party today to celebrate Emerson's #2 and Elyssa's #3 (Emma's cousin). Hopefully I can get some more pictures up of that in the days to come. For now, I need to get to sleep.

HAPPY BIRTHDAY EMERSON!!

I went back to the hospital after the party and spent some time with Chi. He needed to be retaped and the tubing of his ventilator needed to be changed, so that was quite the ordeal. I hate seeing him turn this awful pale shade of gray color. Thankfully his color in his face came back pretty quickly, but his hands and feet took a while. After results from a chest x-ray came back a little while later, I was able to hold Malachi. He was super comfy and relaxed in my arms. That sounds great, BUT he got too comfortable and as his heart rate decreased, so did his oxygen saturation levels. Because of the low sats, he needed to be moved back to his bed. As soon as he was back up there, his sats were fine. What a stinker!

malachi=2 months + 2 days; emerson=2 years!!

4:30 we got the call. Malachi is back in SVT (supraventricular tachycardia--a.k.a. super fast heart rate) and is unresponsive to the usual medication. The fellow that was on overnight was working on him at the bedside. they gave a few doses of adenosine which didn't help for longer than a few seconds. The also attempted a vagal response maneuver to trigger the diving reflex (practically suffocating him briefly with an ice bag to his face--horrible to think about). This too helped, but only for a brief amount of time. Procainamide was once again started. He received 3 boluses and then was put on a drip IV for the rest of the day.

The SVT came on all of a sudden around 3:00 a.m. with a heart rate spike to 270. From just looking at the monitor, our nurse assumed that he was TICKED! When she looked at him laying in his bed though he was fast asleep. She immediately knew that something was wrong. I came into the hospital around 7:00 a.m. assuming that the cardiac cath was still going to go on as planned. Anesthesia even came by this morning to get my consent. At about 7:45 the cardiologist who was going to have been doing the cath came to visit Chi at the bedside. He made the decision that it would be best to wait and let the SVT resolve before pursuing the cath. Not only would it be a riskier procedure from an anesthesia standpoint with the SVT, but they would also get a more accurate picture of what his heart looks like "normally" if they waited. So today... we waited. Slowly, he his rate made its way down and he is no longer in SVT. The cath has been postponed until tomorrow morning (12/30).

I was very overwhelmed at Chi's bedside this morning. I was really looking forward to hopefully getting some answers this morning. I can be patient and I can wait another day. I just want the doctors to figure out my baby. I want him to be better. I want to bring him home. I was very much focused solely on myself this morning and was thankful that God snapped me out of it. I was fighting the mommy guilt bigtime today in regard to spending time with my sick baby at the hospital and spending the day with Emerson. Today was her 2nd birthday! Thankfully, things started to settle at the hospital and I was able to be there for rounds from cardiology and NICU. I made it home by like 1:30 this afternoon and laid down with Emma for her nap. I was just going to lay with her until she fell asleep, but we BOTH ended up taking a THREE hour nap. It was much needed for both of us.

We had a birthday party today to celebrate Emerson's #2 and Elyssa's #3 (Emma's cousin). Hopefully I can get some more pictures up of that in the days to come. For now, I need to get to sleep.

HAPPY BIRTHDAY EMERSON!!

I went back to the hospital after the party and spent some time with Chi. He needed to be retaped and the tubing of his ventilator needed to be changed, so that was quite the ordeal. I hate seeing him turn this awful pale shade of gray color. Thankfully his color in his face came back pretty quickly, but his hands and feet took a while. After results from a chest x-ray came back a little while later, I was able to hold Malachi. He was super comfy and relaxed in my arms. That sounds great, BUT he got too comfortable and as his heart rate decreased, so did his oxygen saturation levels. Because of the low sats, he needed to be moved back to his bed. As soon as he was back up there, his sats were fine. What a stinker!

unfamiliar faces

a new month marks the beginning of a new set of people who will be in and out on Malachi's case. we will be saying goodbye (for now) to dr. engle and hello to dr. allen. i have heard good things about dr. allen from some of the other nicu moms, so that gives me some comfort; but i will miss having a doctor who already is familiar with the ins and outs of Malachi's specific things. i was able to talk with dr. engle a bit when he came in to check on Chi before the changeover. he will be missed. not only do we have a new doctor, but i was also introduced to a new fellow. he is one of the fellows that i've seen around, but he hasn't necessarily been a direct part of Chi's care until now. unfortunately, with all the new people, i was NOT able to really ask many questions as they are just getting up to speed with all their new NICU babies. to make the day just a BIT harder, our regular NNP was out sick so even the NNP working today wasn't familiar with Malachi. :( sad. at least Jo, the nurse, is one of Chi's regulars.

because of the doctor changeover, dr. engle was giving the history of the babies to dr. allen at the bedside. Malachi's history seemed to go on and on and on and on and on and on (you get the idea). boy is it overwhelming to listen to EVERYTHING he has going on in one conversation. i'm learning to just take things day by day--that's all i can do right now, so hearing him list off everything that has already taken place during this hospital course and the things that we haven't even been able to address yet was incredible. this little boy is certainly a fighter!

originally the plan for this week was surgery--gastrostomy placement with Nissen fundoplication and a possible tracheostomy (they are going to evaluate for this with a bronchoscopy immediately preceding the g-tube procedure). unfortunately, those plans are being placed on hold because the cardiac issues are of greater importance. malachi will undergo cardiac catheterization tomorrow morning bright and early (first case at 8 or so) for diagnostic studies. they will mainly be evaluating the bloodflow through the sano shunt that was placed during his open-heart surgery over a month ago. they will also evaluate and take measurements of other areas of his heart as well. obviously, we won't know how to proceed with regard to chi's heart issues until this takes place. hopefully, this will give us a clear and accurate picture of what chi needs in order to get better. this should also tell us if there is something surgically that needs to be done or can be done to help him get better.

chi is still pretty sick (just in general--no specific infection or anything). he's been pretty agitated with his cares and that sort of thing, understandable. the kid just keeps getting poked and proded and he has a huge tube shoved down his throat again and his stent is sticking halfway out his nose! thankfully, if he survives this hospitalization he won't remember any of it. i pray he doesn't remember.

thats all for now. grandma kathy is in town and we're going to spend the afternoon out and about.

unfamiliar faces

a new month marks the beginning of a new set of people who will be in and out on Malachi's case. we will be saying goodbye (for now) to dr. engle and hello to dr. allen. i have heard good things about dr. allen from some of the other nicu moms, so that gives me some comfort; but i will miss having a doctor who already is familiar with the ins and outs of Malachi's specific things. i was able to talk with dr. engle a bit when he came in to check on Chi before the changeover. he will be missed. not only do we have a new doctor, but i was also introduced to a new fellow. he is one of the fellows that i've seen around, but he hasn't necessarily been a direct part of Chi's care until now. unfortunately, with all the new people, i was NOT able to really ask many questions as they are just getting up to speed with all their new NICU babies. to make the day just a BIT harder, our regular NNP was out sick so even the NNP working today wasn't familiar with Malachi. :( sad. at least Jo, the nurse, is one of Chi's regulars.

because of the doctor changeover, dr. engle was giving the history of the babies to dr. allen at the bedside. Malachi's history seemed to go on and on and on and on and on and on (you get the idea). boy is it overwhelming to listen to EVERYTHING he has going on in one conversation. i'm learning to just take things day by day--that's all i can do right now, so hearing him list off everything that has already taken place during this hospital course and the things that we haven't even been able to address yet was incredible. this little boy is certainly a fighter!

originally the plan for this week was surgery--gastrostomy placement with Nissen fundoplication and a possible tracheostomy (they are going to evaluate for this with a bronchoscopy immediately preceding the g-tube procedure). unfortunately, those plans are being placed on hold because the cardiac issues are of greater importance. malachi will undergo cardiac catheterization tomorrow morning bright and early (first case at 8 or so) for diagnostic studies. they will mainly be evaluating the bloodflow through the sano shunt that was placed during his open-heart surgery over a month ago. they will also evaluate and take measurements of other areas of his heart as well. obviously, we won't know how to proceed with regard to chi's heart issues until this takes place. hopefully, this will give us a clear and accurate picture of what chi needs in order to get better. this should also tell us if there is something surgically that needs to be done or can be done to help him get better.

chi is still pretty sick (just in general--no specific infection or anything). he's been pretty agitated with his cares and that sort of thing, understandable. the kid just keeps getting poked and proded and he has a huge tube shoved down his throat again and his stent is sticking halfway out his nose! thankfully, if he survives this hospitalization he won't remember any of it. i pray he doesn't remember.

thats all for now. grandma kathy is in town and we're going to spend the afternoon out and about.

two month birthday!!!

sorry, i've been horrible with pictures lately and i KNOW that they're the best part! Hopefully I will have some sooner rather than later. I can't believe two months has already gone by. Some days it feels much more than that and some days it feels much less.

Not much by way of update. Chi had a very "stable" day as far as heart rate and oxygen saturations go. Unfortunately, he requires the ventilator and nitric oxide to maintain this "stable" state. Also, the stent in his left nasal passage has come forward and is now sticking halfway out his nostril. poor guy! hopefully they will get that taken care of tomorrow.

Cardiology has tweaked his heart medications and Malachi has seemed to respond to their changes in a great way. Although he is not having as MANY desaturations, he is still having them. There is a good chance that he will have a cardiac catheterization in the next couple days.

two month birthday!!!

sorry, i've been horrible with pictures lately and i KNOW that they're the best part! Hopefully I will have some sooner rather than later. I can't believe two months has already gone by. Some days it feels much more than that and some days it feels much less.

Not much by way of update. Chi had a very "stable" day as far as heart rate and oxygen saturations go. Unfortunately, he requires the ventilator and nitric oxide to maintain this "stable" state. Also, the stent in his left nasal passage has come forward and is now sticking halfway out his nostril. poor guy! hopefully they will get that taken care of tomorrow.

Cardiology has tweaked his heart medications and Malachi has seemed to respond to their changes in a great way. Although he is not having as MANY desaturations, he is still having them. There is a good chance that he will have a cardiac catheterization in the next couple days.

a better day

Today seemed to be better. Cardiology still does not know what, if anything, is wrong with Malach's heart or if his heart issues are in any part a cause of his continual desaturation episodes. I was there for a few hours this morning and he had one episode where he dropped into the 40s and required some manual breaths through the ventilator in order to get him back up to the 60s. It's hard to watch the color slowly drain from your child's body while his lips and eyelids slowly darken. It is obviously imperative that these desat issues are completely resolved before we can bring our baby home. For Cardiology to be able to pinpoint if there is in fact an underlying problem with the heart, they will most likely be doing a cardiac catheterization. The importance of this issue obviously supercedes the urgency of a gastrostomy tube or a tracheostomy. Pray for Malachi's heart.

On another note, John and I were able to spend the majority of the day with Emerson. I swear she just keeps getting cuter each day. Wish I was around to see more of it. One day, as hard and painstakingly tiring as it may be, we will all be under the same roof. We will once again have a new normal. It was also nice to feel like a "normal" mom and take care of some domestic duties around the house. This is where we are, for now...

a better day

Today seemed to be better. Cardiology still does not know what, if anything, is wrong with Malach's heart or if his heart issues are in any part a cause of his continual desaturation episodes. I was there for a few hours this morning and he had one episode where he dropped into the 40s and required some manual breaths through the ventilator in order to get him back up to the 60s. It's hard to watch the color slowly drain from your child's body while his lips and eyelids slowly darken. It is obviously imperative that these desat issues are completely resolved before we can bring our baby home. For Cardiology to be able to pinpoint if there is in fact an underlying problem with the heart, they will most likely be doing a cardiac catheterization. The importance of this issue obviously supercedes the urgency of a gastrostomy tube or a tracheostomy. Pray for Malachi's heart.

On another note, John and I were able to spend the majority of the day with Emerson. I swear she just keeps getting cuter each day. Wish I was around to see more of it. One day, as hard and painstakingly tiring as it may be, we will all be under the same roof. We will once again have a new normal. It was also nice to feel like a "normal" mom and take care of some domestic duties around the house. This is where we are, for now...

easy to please

M: Emma, what do you want for Christmas?
E: PRESENTS!!

12/25/2009 update

Another not so amazing day for Malachi. He's certainly fighting though. They are still struggling to keep his oxygen saturation levels where they need to be. They have been unable to wean him down on any of the nitric oxide or the oxygen through the ventilator with out his sats dropping. So he is on 100% oxygen and 20 ppm (parts per million) of the nitric oxide. Even with those settings, he dropped down into the 30s for his sats and would not come up on his own. They had to use the resuscitation mask, I believe, on three separate occasions today. This does not set well with my tummy. We are still hopeful, but we are also very heavy-hearted. It's very frustrating to be in a constant state of unknowns. But that is where we are.

Today was once again spent shuffling here and there, back and forth between time spent with family and at the hospital. We hope Christ wasn't completly "lost in the shuffle," but I think it's safe to say unfortunately that God's gift of sending Him to die for our sins wasn't necessarily on the forefront of our mind for a greater part of the day. Thankfully, the God of the Bible is a God of second chances.

I was reading today a book called "Shopping for Time." The following is an excerpt from that book, but I have replaced some of the names. I hope that one day, this can be said of me in my situation:

...This was not the life she had planned. It wasn't what she wanted. She felt stuck in a season that wouldn't end. Like [Marissa], none of us would choose "a time to weep," or "a time to mourn," or a time of sickness--a lifetime of sickness. This isn't what [Marissa] chose. But it's what God chose for [Marissa]. Here, inside this truth, [Marissa] found joy. No, [Malachi] didn't get better...Yet she came to the realization that this life--one she hadn't planned for herself--was the very life God had planned for her. God had designed this long, unexpected, unwelcome season so that [Marissa] could best glorify Him. he had allowed this trial so that He could show His goodness and mercy to [Marissa] in totally unexpected ways. [Marissa] found joy when she came to rest in the truth that God orders our seasons.

...If you were to meet [Marissa], her joy would be immediately obvious. It's a deep joy, infused with peace. And it displays itself in a genuine care for others and continual expressions of gratefulness to God. To be around [Marissa] is to catch a glimpse of the love and goodness of Christ. [Marissa] isn't just surviving. She's truly thriving, growing, and rejoicing in the season God has ordained.

Lord, I pray that the above might be my testimony to those I leave behind when my time here on earth is through. Thank you for ordaining my seasons.

12/25/2009 update

Another not so amazing day for Malachi. He's certainly fighting though. They are still struggling to keep his oxygen saturation levels where they need to be. They have been unable to wean him down on any of the nitric oxide or the oxygen through the ventilator with out his sats dropping. So he is on 100% oxygen and 20 ppm (parts per million) of the nitric oxide. Even with those settings, he dropped down into the 30s for his sats and would not come up on his own. They had to use the resuscitation mask, I believe, on three separate occasions today. This does not set well with my tummy. We are still hopeful, but we are also very heavy-hearted. It's very frustrating to be in a constant state of unknowns. But that is where we are.

Today was once again spent shuffling here and there, back and forth between time spent with family and at the hospital. We hope Christ wasn't completly "lost in the shuffle," but I think it's safe to say unfortunately that God's gift of sending Him to die for our sins wasn't necessarily on the forefront of our mind for a greater part of the day. Thankfully, the God of the Bible is a God of second chances.

I was reading today a book called "Shopping for Time." The following is an excerpt from that book, but I have replaced some of the names. I hope that one day, this can be said of me in my situation:

...This was not the life she had planned. It wasn't what she wanted. She felt stuck in a season that wouldn't end. Like [Marissa], none of us would choose "a time to weep," or "a time to mourn," or a time of sickness--a lifetime of sickness. This isn't what [Marissa] chose. But it's what God chose for [Marissa]. Here, inside this truth, [Marissa] found joy. No, [Malachi] didn't get better...Yet she came to the realization that this life--one she hadn't planned for herself--was the very life God had planned for her. God had designed this long, unexpected, unwelcome season so that [Marissa] could best glorify Him. he had allowed this trial so that He could show His goodness and mercy to [Marissa] in totally unexpected ways. [Marissa] found joy when she came to rest in the truth that God orders our seasons.

...If you were to meet [Marissa], her joy would be immediately obvious. It's a deep joy, infused with peace. And it displays itself in a genuine care for others and continual expressions of gratefulness to God. To be around [Marissa] is to catch a glimpse of the love and goodness of Christ. [Marissa] isn't just surviving. She's truly thriving, growing, and rejoicing in the season God has ordained.

Lord, I pray that the above might be my testimony to those I leave behind when my time here on earth is through. Thank you for ordaining my seasons.

Throughout the course of the last few months, there have been many people saying that they are praying for us. For that, we could never completely express our gratitude and appreciation. We must also keep in mind the very true reality that only the effective, fervent prayer of a righteous man avails much (James 5:16). Then one must ask, “Who is righteous?”

A righteous person is one who has been made blameless in the sight of God. Scripture reveals to us that all have sinned and come short of the glory of God (Romans 3:23) and the wages of sin is death, everlasting death (Romans 6:23). Therefore, no one is good enough to attain righteousness of their own merit. This is exactly why God sent his son to earth (John 3:16). Christ was born to die in order to pay the penalty of our sins. Christ came to seek and save sinners (Luke 19:10). It is then through Christ’s righteousness that we can be made right before God. True repentance is to turn from your sin to God. If you confess with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved (Romans 10:9). Repent, confess, and believe.

No earthly man can evaluate or judge whether or not a person is truly saved, but God sees the heart. Love is obedience. Jesus said, “If you love Me, you will keep My commandments” (John 14:15). He who says, “I know Him,” but disobeys His commandments is a liar, and the truth is not in him (1 John 3:10).

It’s all or nothing. God is God whether you believe the Bible or not. He has clearly revealed Himself in the Bible. Jesus said, “I am the way and the truth and the life. No one comes to the Father except through me” (John 14:6). Believe. Be Saved. Love. Obey.

The only thing sustaining us during this horribly heart-wrenching time of our lives is the fact that we have the Holy Spirit living within us giving us the strength we need for each day, each hour, each moment. God is all-sufficient and we pray that that might be evident to those we encounter on the journey He had set out before us.

********

If you are a new believer, a mature believer, or even one who thinks this post is a waste of your time, I would encourage you to do at least the following things:

*Read the Bible to learn more about God and how to be obedient in service to Him as gratitude for creating and saving you (or at least soften your heart and be receptive to the Truth God has revealed to us through His Word).

*Find a Bible-believing church and begin to worship and grow together with other people who treasure Christ above all things. (If you are in the Des Moines area, I highly recommend Willow Creek Baptist Church. In the Indianapolis area? Check out Calvary Baptist Church in Plainfield).

Throughout the course of the last few months, there have been many people saying that they are praying for us. For that, we could never completely express our gratitude and appreciation. We must also keep in mind the very true reality that only the effective, fervent prayer of a righteous man avails much (James 5:16). Then one must ask, “Who is righteous?”

A righteous person is one who has been made blameless in the sight of God. Scripture reveals to us that all have sinned and come short of the glory of God (Romans 3:23) and the wages of sin is death, everlasting death (Romans 6:23). Therefore, no one is good enough to attain righteousness of their own merit. This is exactly why God sent his son to earth (John 3:16). Christ was born to die in order to pay the penalty of our sins. Christ came to seek and save sinners (Luke 19:10). It is then through Christ’s righteousness that we can be made right before God. True repentance is to turn from your sin to God. If you confess with your mouth, “Jesus is Lord,” and believe in your heart that God raised him from the dead, you will be saved (Romans 10:9). Repent, confess, and believe.

No earthly man can evaluate or judge whether or not a person is truly saved, but God sees the heart. Love is obedience. Jesus said, “If you love Me, you will keep My commandments” (John 14:15). He who says, “I know Him,” but disobeys His commandments is a liar, and the truth is not in him (1 John 3:10).

It’s all or nothing. God is God whether you believe the Bible or not. He has clearly revealed Himself in the Bible. Jesus said, “I am the way and the truth and the life. No one comes to the Father except through me” (John 14:6). Believe. Be Saved. Love. Obey.

The only thing sustaining us during this horribly heart-wrenching time of our lives is the fact that we have the Holy Spirit living within us giving us the strength we need for each day, each hour, each moment. God is all-sufficient and we pray that that might be evident to those we encounter on the journey He had set out before us.

********

If you are a new believer, a mature believer, or even one who thinks this post is a waste of your time, I would encourage you to do at least the following things:

*Read the Bible to learn more about God and how to be obedient in service to Him as gratitude for creating and saving you (or at least soften your heart and be receptive to the Truth God has revealed to us through His Word).

*Find a Bible-believing church and begin to worship and grow together with other people who treasure Christ above all things. (If you are in the Des Moines area, I highly recommend Willow Creek Baptist Church. In the Indianapolis area? Check out Calvary Baptist Church in Plainfield).

I celebrate the day... (john)

Usually I get pretty excited about Christmas Eve because that is the day my family has traditionally opened presents! Maybe you are like me where in the past I have always had at least one thing that I really wanted. But this year has been totally different for me. I mean its hard to come up with a list of stuff I really want. sure another this or another that would be great. I'm not saying I wont enjoy getting presents, but its hard to describe. I just have a different feeling about Christmas this year. I've always been excited about Christmas time. I love being with friends and family. I love the decorations and the lights. I love the atmosphere and I have always loved the presents. But it just feels different. Like obviously something is missing. I would give up everything I own... every material possession I have and all I would ask if for would be that my WHOLE family would be home this Christmas. Marissa and I both feel that way. We truly and honestly could care less about anything else if we could just have our son home with us. I want him to be healthy and safe, and I want to hold him in my own house while watching my wife and daughter open presents. I was sitting there holding him the other day and the real truth of Christmas hit me. And dare I say possibly even for the first time. I'm just not sure if I remember Genuinely feeling this way before. I thought about why we really do have Christmas. Yes, I am one of many who often say that "Jesus is the reason for the season." And He truly is, but how often do we say that and then still get swallowed up in everything else that comes with Christmas every year? Once again I am not saying all the fun, decorations, time with family, and presents are bad. They are goods things (usually). I am merely saying that even with good intentions and plenty of reminders I still find myself distracted during the Christmas time. I've been praying the Lord would give me His grace and strength so that I might not lose site of Him this holiday season. Because I had to sit there and take a long hard clear look at myself. Have you really sat down and pondered in between the decorating, buy and opening of presents, and the eating of all that great food why you do anything you do? I mean be real with who you are. Look in the mirror and see not who you perceive or want yourself to be but who you are. I think it scares us to really thinking about looking at ourselves honestly. It does me. It reminds me of when I use to "clean my room." I use to just shove everything under my bed. Things I liked and things I wanted to hide found their way under there. Then finally it would come time for me to actually clean my room. And I would have to face the dreaded under the bed area. I thought that if I had to clean everything then I might as well do it right and everything would come out from under that bed. It would be a frightening sight. Ask my parents! I used to do a pretty good job of hiding how much junk I had down there under that bed. And I felt that way sitting there with my son thinking about who I was this Christmas season and what I was celebrating. I don't like thinking and pondering about what is wrong with me. But how can I ask the Lord to help me change those things if I am unwilling to be honest with myself and Him. Far too often I have celebrated the celebration of Christmas and not really celebrated the fact that my God gave up so much and was born just to die on a cross to save the world! The few times I actually do think about Christ coming as a Child I don't really think about what He gave up or what it was like for him to humble himself like that. I pray that I will celebrate Christ this Christmas.

I leave you with 2 of my favorite Christmas songs (the second one is my favorite). I enjoy these not because of the tune or the vocals (even though I honestly do enjoy those) but because they help me to celebrate Christ and not just a holiday.

How Many Kings? (sung by the group Downhere)



Follow the star to a place unexpected

Would you believe, after all we've projected,

A child in a manger?

Lowly and small, the weakest of all

Unlikeliest hero, wrapped in his mother's shawl -

Just a child -

Is this who we've waited for? 'cause...



How many kings step down from their thrones?

How many lords have abandoned their homes?

How many greats have become the least for me?

And how many gods have poured out their hearts

To romance a world that is torn all apart

How many fathers gave up their sons for me?



Bringing our gifts for the newborn Savior

All that we have, whether costly or meek

Because we believe.

Gold for his honor, and frankincense for his pleasure

And myrrh for the cross he will suffer

Do you believe?

Is this who we've waited for?

How many kings step down from their thrones?

How many lords have abandoned their homes?

How many greats have become the least for me?

And how many gods have poured out their hearts

To romance a world that is torn all apart

How many fathers gave up their sons for me?



All for me...

All for you…

I Celebrate the Day (sung by the group Relient K)



And with this Christmas wish is missed

The point I could convey

If only I could find the words to say to let You know how much You've touched my life

Because here is where You're finding me, in the exact same place as New Year's eve

And from a lack of my persistency

We're less than half as close as I want to be



And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever



And so this Christmas I'll compare the things I felt in prior years

To what this midnight made so clear

That You have come to meet me here

To look back and think that

This baby would one day save me

In the hope that what You did

That you were born so I might live

To look back and think that

This baby would one day save me

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever



And I, I celebrate the day

That You were born to die

So I could one day pray for You to save my life

I celebrate the day... (john)

Usually I get pretty excited about Christmas Eve because that is the day my family has traditionally opened presents! Maybe you are like me where in the past I have always had at least one thing that I really wanted. But this year has been totally different for me. I mean its hard to come up with a list of stuff I really want. sure another this or another that would be great. I'm not saying I wont enjoy getting presents, but its hard to describe. I just have a different feeling about Christmas this year. I've always been excited about Christmas time. I love being with friends and family. I love the decorations and the lights. I love the atmosphere and I have always loved the presents. But it just feels different. Like obviously something is missing. I would give up everything I own... every material possession I have and all I would ask if for would be that my WHOLE family would be home this Christmas. Marissa and I both feel that way. We truly and honestly could care less about anything else if we could just have our son home with us. I want him to be healthy and safe, and I want to hold him in my own house while watching my wife and daughter open presents. I was sitting there holding him the other day and the real truth of Christmas hit me. And dare I say possibly even for the first time. I'm just not sure if I remember Genuinely feeling this way before. I thought about why we really do have Christmas. Yes, I am one of many who often say that "Jesus is the reason for the season." And He truly is, but how often do we say that and then still get swallowed up in everything else that comes with Christmas every year? Once again I am not saying all the fun, decorations, time with family, and presents are bad. They are goods things (usually). I am merely saying that even with good intentions and plenty of reminders I still find myself distracted during the Christmas time. I've been praying the Lord would give me His grace and strength so that I might not lose site of Him this holiday season. Because I had to sit there and take a long hard clear look at myself. Have you really sat down and pondered in between the decorating, buy and opening of presents, and the eating of all that great food why you do anything you do? I mean be real with who you are. Look in the mirror and see not who you perceive or want yourself to be but who you are. I think it scares us to really thinking about looking at ourselves honestly. It does me. It reminds me of when I use to "clean my room." I use to just shove everything under my bed. Things I liked and things I wanted to hide found their way under there. Then finally it would come time for me to actually clean my room. And I would have to face the dreaded under the bed area. I thought that if I had to clean everything then I might as well do it right and everything would come out from under that bed. It would be a frightening sight. Ask my parents! I used to do a pretty good job of hiding how much junk I had down there under that bed. And I felt that way sitting there with my son thinking about who I was this Christmas season and what I was celebrating. I don't like thinking and pondering about what is wrong with me. But how can I ask the Lord to help me change those things if I am unwilling to be honest with myself and Him. Far too often I have celebrated the celebration of Christmas and not really celebrated the fact that my God gave up so much and was born just to die on a cross to save the world! The few times I actually do think about Christ coming as a Child I don't really think about what He gave up or what it was like for him to humble himself like that. I pray that I will celebrate Christ this Christmas.

I leave you with 2 of my favorite Christmas songs (the second one is my favorite). I enjoy these not because of the tune or the vocals (even though I honestly do enjoy those) but because they help me to celebrate Christ and not just a holiday.

How Many Kings? (sung by the group Downhere)



Follow the star to a place unexpected

Would you believe, after all we've projected,

A child in a manger?

Lowly and small, the weakest of all

Unlikeliest hero, wrapped in his mother's shawl -

Just a child -

Is this who we've waited for? 'cause...



How many kings step down from their thrones?

How many lords have abandoned their homes?

How many greats have become the least for me?

And how many gods have poured out their hearts

To romance a world that is torn all apart

How many fathers gave up their sons for me?



Bringing our gifts for the newborn Savior

All that we have, whether costly or meek

Because we believe.

Gold for his honor, and frankincense for his pleasure

And myrrh for the cross he will suffer

Do you believe?

Is this who we've waited for?

How many kings step down from their thrones?

How many lords have abandoned their homes?

How many greats have become the least for me?

And how many gods have poured out their hearts

To romance a world that is torn all apart

How many fathers gave up their sons for me?



All for me...

All for you…

I Celebrate the Day (sung by the group Relient K)



And with this Christmas wish is missed

The point I could convey

If only I could find the words to say to let You know how much You've touched my life

Because here is where You're finding me, in the exact same place as New Year's eve

And from a lack of my persistency

We're less than half as close as I want to be



And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever



And so this Christmas I'll compare the things I felt in prior years

To what this midnight made so clear

That You have come to meet me here

To look back and think that

This baby would one day save me

In the hope that what You did

That you were born so I might live

To look back and think that

This baby would one day save me

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever

And the first time

That You opened Your eyes did You realize that You would be my Savior

And the first breath that left Your lips

Did You know that it would change this world forever



And I, I celebrate the day

That You were born to die

So I could one day pray for You to save my life